2.5 year old who does NOT sleep - help? Long. Long. Long.

[AimeeM]

I've posted about it before, but I believed he would outgrow it... or that we would figure something out. We haven't, he isn't, it's WORSE.

 

The Marvelous Flying Marco is 2.5.

 

He is high strung, speech delayed, and almost ridiculously intelligent. We had assumed that he would be the brawn to DS5's brains - but he is both the brawn and MORE brain. He is busy, busy, busy during the day (just ask his intervention team, lol; "busy boy" is noted on every. single. eval - without fail). 

 

He is, at this moment (and running on only about 5 hours of - broken - sleep in the past 24 hours), literally running through the house singing his alphabet - stop - turning in circles pointing at the air counting by 1's, counting by 2's, at his invisible number friends - stop - running up to the television to sound out words displayed on the screen - stop - running up and down the hallway yelling for somebody to "dan" (dance) with him. 

 

Last night was a typical night for us, unfortunately. Tony and I were out with the realtor looking at homesites until about 7:30; the kids were here with the sitter (new sitter, who is WONDERFUL, young, and can totally keep up with Marco, lol). We came home, I put Marco to bed about 8; he slept until 11:30, was up until 2 am, went back to sleep and slept until 3 am, and then he was up for the day; he went down for a 2 hour nap around 11 am today (slept until a bit after 1).

 

Nap or no nap, it doesn't matter; his pattern seems to hold. I've tried taking his naps, and I've tried pushing the nap. Eighty-percent of the time, his sleep pattern was like last night (2 hours here, 2 hours there, then UP for the day); when he DOES sleep through the night, he sleeps HARD, and for about 12 hours (from 7 to 7, or something similar).

 

If you ignore him when he wakes during the night, he just plays or looks through books - but if you continue to ignore him, he WILL get violent with himself - throwing himself against the door, the toybox, onto the floor, etc. Sometimes. Other times he is just content to amuse himself in the wee hours of the morning (and I don't mean 6 am - I could handle that; I mean like 1, 2, or 3 am). 

 

I was able to get back into our master bedroom for the first part of the night (if you recall other posts, I've been sleeping on the boys' bedroom floor with Marco for about 2 years now, because of how dangerous his climbing adventures can become), but I have to relocate back to the boys' room at some point to make sure Marco doesn't climb anything he shouldn't, throw anything he shouldn't (including himself), etc. DS5 now sleeps in our master bed, because Marco sees nothing wrong with hopping (literally) on top of his sleeping big brother in the middle of the night.

 

He had a specialty OT eval the other evening. I say "specialty" because we were waiting specifically for one evaluator, who specializes in atypical OT needs - like Marco's dangerous "busyness" as the intervention calls it. I have no clue when OT starts for him, though.

 

Did I mention that he landed himself in the ER on Christmas day? While we were out of state visiting my FIL. Fun times. While he was hurting, the staff was commenting on how calm and what a good boy he was - but as soon as they fixed his elbow up, he immediately staged an escape - out of the ER curtain, down the hall, trying to climb the christmas tree, singing in his nonsensical jargon to the staff, while he "bunny hopped" down the hall; we bring him back to the room and he's trying to climb the exam bed from the back. The staff then switches to giggles and sympathetic "this too shall pass" comments, lol.

 

The pediatrician DID okay melatonin for him, but it does absolutely NOTHING. He gets plenty of exercise during the day. 

 

I am e.x.h.a.u.s.t.e.d.

 

He has a great bedtime routine - bath with a nice lavender bubble bath, lotion and a rub down, fresh diaper, pajamas, bedtime stories, a snack, cuddles, songs... it's been the same since he was a wee babe. He enjoys the routine... but it does nothing to KEEP HIM ASLEEP.

 

I do want to say that he is a HAPPY boy, and so affectionate - he is sociable, playful, full of hugs and kisses, loves being read, and can be hilarious (my husband just picked up his drink cup, which had something "off" in it - Marco had put DS5's minecraft horse in it to give the horsey a drink). He is such a bright light in the house - he is darling and so sweet. 

 

He would be even sweeter if he would SLEEP, though :D I have been running on fumes for over 2 years - since he first became mobile; fumes and coffee (I should buy stock in Starbucks).

 

Is there anything we HAVEN'T tried? Anything that worked for your energetic boys who didn't sleep?

 

I will note that DS5 doesn't sleep through the night either... but he has numerous medical issues and has always been the calm, quiet, more studious type - so there was never any danger that we feared with him up at night; he simply comes to get us for a drink, or to ask to be held; he lays down and goes right back to sleep. Marco (DS2), not so much.

[Guest submarines]

:grouphug: DD13 has been having sleep issues since babyhood, but she isn't "busy" other than keeping herself awake. Have you tried essential oils and white noise? We had periods when it helped. A friend of mine had luck with letting her DS sleep in a special sleep hammock they ordered--the constant motion soothed him.

[Ottakee]

When you tried the melatonin, did you try the time release version?  That type tends to help people STAY asleep while the regular version just helps them fall asleep.

 

Would the doctor consider a sleep study to see if they could figure out what was going on?

 

My one that was just like him, at least DID sleep.  I think if she would not have slept we would not have been able to keep her (she was foster and later adopted). She was extremely active......so much so that the neuropsychologist that tested her right near her 3rd birthday came out of the room after an hour of 1:1 in a toy room and said "I am exhausted"........YEP, no wonder I was tired too.

 

I hate to suggest this as it certainly isn't a first line of defense, but for some kids with ADHD meds for ADHD actually help them sleep.  It helps quiet their minds so they can sleep.  There are other options as well.

 

I know it is very controversial to suggest meds, esp. at only 2 1/2 years old...........BUT I say over and over again, if we had known then what we know now, I would have started meds for my dd at 18 months old.  Seriously, I think it would have helped her moods, focus, speech, etc.  We did have a good team though and a peds psychiatrist working with us that was the best around for toddlers.

[mamakelly]

Check b12 levels. Kids with low b12 are physically unable to sleep well.

[AimeeM]

:grouphug: DD13 has been having sleep issues since babyhood, but she isn't "busy" other than keeping herself awake. Have you tried essential oils and white noise? We had periods when it helped. A friend of mine had luck with letting her DS sleep in a special sleep hammock they ordered--the constant motion soothed him.

We haven't tried oils. We have tried white noise... and other noise... and no noise :P

 

I'm pretty terrified to try a hammock. I can only think of the million and one ways that Marco could find a way to land himself in the ER again with something as cool as a hammock at his disposal, lol.

[Jennifer in MI]

When you tried the melatonin, did you try the time release version?  That type tends to help people STAY asleep while the regular version just helps them fall asleep.

 

Would the doctor consider a sleep study to see if they could figure out what was going on?

 

My one that was just like him, at least DID sleep.  I think if she would not have slept we would not have been able to keep her (she was foster and later adopted). She was extremely active......so much so that the neuropsychologist that tested her right near her 3rd birthday came out of the room after an hour of 1:1 in a toy room and said "I am exhausted"........YEP, no wonder I was tired too.

 

I hate to suggest this as it certainly isn't a first line of defense, but for some kids with ADHD meds for ADHD actually help them sleep.  It helps quiet their minds so they can sleep.  There are other options as well.

 

I know it is very controversial to suggest meds, esp. at only 2 1/2 years old...........BUT I say over and over again, if we had known then what we know now, I would have started meds for my dd at 18 months old.  Seriously, I think it would have helped her moods, focus, speech, etc.  We did have a good team though and a peds psychiatrist working with us that was the best around for toddlers.

My mother was losing her mind with my brother.  He slept like OP's son.  And, was just as active.  The pediatrician then (this was early 1970s) didn't believe my mother.  So, my mom went in to the office with my dad and my brother and my dad demanded he help.  Something was up.  He was diagnosed with ADHD son after and put on meds.  It helped.

 

((hugs)) as you figure this out.

 

My brother still needs next to no sleep as a 42 year old adult!!

[AimeeM]

I'm not sure if it was the time release - I'll check that. Great point.

 

She would consider a sleep study... I'm the one who hesitates. The kids I know locally who went to the sleep clinic, ended up on some pretty hefty meds (which I wouldn't consider, having been on sleep meds for years myself - prior to Marco). I will see if we could have the study done, and still retain the ability to walk away from any heavy med recommendations.

 

Concerning meds and your fourth paragraph - I'm NOT anti meds. Our eldest is ADD (not hyperactive) and has been medicated almost always since second grade (she's 13 now). The last time we were in the ped's office, she only half-jokingly watched Marco make a break for it (out the exam room door) for the fifth time and remarked "it won't be long before I'm seeing HIM for ADD meds, eh". She laughed, but I don't think she was entirely joking. My concern with the sleeping and ADD meds... they keep my DD up. Big time. In fact, she's now on a sleeping med because of it (not a heavy one, though - it's a med used for blood pressure that has a side effect of helping relax a body). I don't think I could handle Marco sleeping even LESS than he does now because of meds, kwim? Also, the mood swings that come with the meds at times... we had to pull DD off of them for about a year... but that WAS right at the beginning of puberty and those hormones, so it might now affect Marco the same way. I'm not sure. I'll talk to his doctor about it... but I'm kind of scared to. I don't want him seen as a behaviour problem... because he ISN'T. If I weren't exhausted from his nighttime adventures, he is  JOY during the day - super, super, super busy, but lovely most of the time. His tantrums are decreasing as his speech is increasing. 

When you tried the melatonin, did you try the time release version?  That type tends to help people STAY asleep while the regular version just helps them fall asleep.

 

Would the doctor consider a sleep study to see if they could figure out what was going on?

 

My one that was just like him, at least DID sleep.  I think if she would not have slept we would not have been able to keep her (she was foster and later adopted). She was extremely active......so much so that the neuropsychologist that tested her right near her 3rd birthday came out of the room after an hour of 1:1 in a toy room and said "I am exhausted"........YEP, no wonder I was tired too.

 

I hate to suggest this as it certainly isn't a first line of defense, but for some kids with ADHD meds for ADHD actually help them sleep.  It helps quiet their minds so they can sleep.  There are other options as well.

 

I know it is very controversial to suggest meds, esp. at only 2 1/2 years old...........BUT I say over and over again, if we had known then what we know now, I would have started meds for my dd at 18 months old.  Seriously, I think it would have helped her moods, focus, speech, etc.  We did have a good team though and a peds psychiatrist working with us that was the best around for toddlers.

 

[AimeeM]

Check b12 levels. Kids with low b12 are physically unable to sleep well.

Levels are good. The only level that is sometimes off with him is his iron levels... which confuses the doctor, because she said that generally children who have low iron levels are more lethargic, sleepy, don't look "well" (circles under eyes, etc) - Marco is the opposite.

[Jyhwkmama]

Definitely try the controlled release melatonin. You could even try 1/2 dose instant release and 1/2 dose controlled release and tweak as necessary.

[Guest submarines]

We haven't tried oils. We have tried white noise... and other noise... and no noise :p

 

I'm pretty terrified to try a hammock. I can only think of the million and one ways that Marco could find a way to land himself in the ER again with something as cool as a hammock at his disposal, lol.

 

Yeah, I can see how a hammock might be a scary proposition. Swaddling / weighted blanket?

[sbgrace]

Well, I was going to mention timed release melatonin and a sleep study too.

Some of the non-stimulant ADHD meds are taken at night because they can cause drowsiness. Maybe that is a possibility for him.

[Farrar]

This is not unlike my boys at that age. If it makes you feel any better, at about 2 years and 11 months, they slept for the first time... and potty trained all in one week. So that's soon for you if you get the same sort thing.

 

What does not sleeping look like? Is he alone in his room? is he in with you? Does he cause a mess? Stay in his crib/bed? Cry endlessly? Sing? Play with toys?

 

I have to tell you, having kids who were insomniacs, I had to come to the belief that you cannot force anyone to sleep. You just can't. It's completely and utterly out of your control. It's like a 12 step program. I accept that I am powerless against the children being awake. I have no say and there's not a magic medicine or routine or anything that will make it change. Every single sleep book or professional type I spoke with about this encouraged me to look for that magic bullet, but I really came to believe it didn't exist. And that, on some level, that search was as tiring (maybe more so) than having a kid up all night.

 

Instead, I worked on controlling the things I could control. I could control what my reaction would be. I could teach my kids not to be screamers in the middle of the night. I could teach them to do quiet things in the night instead of whining and complaining. I could just refocus my energy from "Go the &*( to sleep!" to "Let me sleep!" And at least for us, it helped.

[AimeeM]

This is not unlike my boys at that age. If it makes you feel any better, at about 2 years and 11 months, they slept for the first time... and potty trained all in one week. So that's soon for you if you get the same sort thing. Good lord, I hope so!

 

What does not sleeping look like? Is he alone in his room? is he in with you? Does he cause a mess? Stay in his crib/bed? Cry endlessly? Sing? Play with toys? The first time he wakes, he wakes up alone; if he starts immediately becoming destructive (the boys' room is right next to ours, so I can hear him easily), I go in - my being there deters the worst of it, it seems; sometimes he immediately screams and throws himself to the hardwoods, into the door, head first towards the toy box, etc - that is when I go in ASAP to help him settle to at least "happy/calm", even if I can't get him back to sleep; other times (few and far between these days) he just wakes and plays or reads/looks at books; still other times he finds something super "creative" to do, that he shouldn't be doing (like when he hid the crayons in the toe of one of his shoes, so that he could "decorate" the walls during the night).

He doesn't sleep in a bed. He HAS a bed, but it proved far too tempting a trampoline in the middle of the night. He sleeps on a doubled up sleeping bag on the floor (what I had been sleeping on with him) with his pillow. 

 

I have to tell you, having kids who were insomniacs, I had to come to the belief that you cannot force anyone to sleep. You just can't. It's completely and utterly out of your control. It's like a 12 step program. I accept that I am powerless against the children being awake. I have no say and there's not a magic medicine or routine or anything that will make it change. Every single sleep book or professional type I spoke with about this encouraged me to look for that magic bullet, but I really came to believe it didn't exist. And that, on some level, that search was as tiring (maybe more so) than having a kid up all night.

 

Instead, I worked on controlling the things I could control. I could control what my reaction would be. I could teach my kids not to be screamers in the middle of the night. I could teach them to do quiet things in the night instead of whining and complaining. I could just refocus my energy from "Go the &*( to sleep!" to "Let me sleep!" And at least for us, it helped. Confession: around 4 this morning I gave him a snack, a drink, a tablet (with a life proof case since he enjoys pouring drinks on electronics) settled myself on my half of the sleeping bag, and went back to sleep for an hour before he started yelling at me to dance with him. I don't know how to teach him not to hurt himself, not to scream, etc. Nothing that I knew as "concrete" as far as parenting goes, as far as what worked on my older two, applies to Marco, it seems.

They are somewhat concerned about his hearing (prone to ear infections), but he faded out in the middle of his audiology appointment, and the audiologist said not to bother bringing him back until he's 3 - that in her experience the test is simply too long for this age group, and a portion of it seemed to frighten him. The ST wonders about his receptive language, because of the *way* his speech is delayed.

 

Honestly, the kid is a big of an enigma. He had never said a three word phrase (or a two word phrase for that matter) until the other day, in front of his ST. She spent 10 minutes trying to get him to say "orange" or "blue" in response a choice over Mr. Potato Head shoes (he knows his colors and has done this exercise before). He seemed confused and remained silent for 10 minutes. She finally said "can you say orange?" (rhetorical, in a way)... to which Marco shrugged, and said (clear as day) "I don't know", before turning his back on her and finding something else to do. 

 

I'm not sure if he's playing us, half the time (see above), or if he's seriously delayed and therefore frustrated (I would be frustrated if I couldn't talk), not receiving language the way he should... or he is just God's gift that says "you thought this would be easy, lady???? Hahahaha".

 

[Pawz4me]

You have my sympathy.  Youngest DS wasn't a busy/hyper child, but he didn't completely sleep through the night until he was five years old. Most of his sleeping problem was related to sensory issues, I think.  It was a very exhausting five years.  I can't imagine not sleeping and dealing with so much activity, too.  If it offers any hope to you -- once DS finally slept through the night that first time, he quickly became a very good sleeper. :grouphug:

[DawnM]

BTDT.  My almost 17 year old didn't sleep through the night until he was 4 years old and even then, he didn't take naps at preschool and would not sleep a full 8 hours.

 

He was 2-3 and would get up at 3am and get out of his toddler bed and go to the living room and yell, "I'm all alone in here!  Someone come play with me!"  on a regular basis!

 

He is now almost 17 and still has horrible trouble sleeping.  We have tried it all.....nothing helps.

[AimeeM]

Chocolate chips. What I enjoy doing when Mom's back is turned doing dishes :) He IS awfully cute. 

 

 

[kubie]

My sons has low iron also. His Doctor said it can cause children to be hyper and not sleep well. My son is hyper but is sleeping better as he has gotten older.

[AimeeM]

One more pic. This sweet smile... is why nobody believes me until they spend an hour with him, lol. I see pure mischief in the smile :)

 

[maize]

Marco is adorable.

 

I am mostly listening in because I have a couple of children with sleep problems. Both are also hyper...and can be emotionally volatile. I think everything is tied together somehow and I just don't know how to untangle it; a sleep study has been on my "need to arrange" list for a long time, but I don't know when I will actually find the time and energy to arrange it.

 

My kids don't sleep as little as yours does, though, it seems to be more a problem of sleep being constantly interrupted.

[ktgrok]

I think anemia can cause insomnia...I seem to remember that from being pregnant. 

 

Also, could some of those awakenings, where he is violent/destructive, be confusional arousals? (google). I's sort of like sleep walking, but not. 

[MotherGoose]

What does caffeine do? Lots of times it will calm down kids with ADHD. Not something to try at bedtime though :)

[AimeeM]

My sons has low iron also. His Doctor said it can cause children to be hyper and not sleep well. My son is hyper but is sleeping better as he has gotten older.

His iron levels are sometimes fine, sometimes low. It is completely random. I'm not sure HOW they expected us to get the iron drops down him (those things are completely disgusting - even a carbonated beverage didn't mask the taste). The doctor later said that it's pretty rare that she can get them down a child in its full dosage, but we were able to get enough down him to bring his levels up enough to satisfy the doctor... and it kind of flip flops here and there (the iron levels). 

I have "anemic tendencies" myself, so there's that.

I will say that it threw us for a loop that this particular child had low iron. Our middle kiddo (DS5) is our super picky eater, but his levels are fine - Marco (DS2), however, is a great eater and not at all picky (and he consistently eats things high in iron).

[AimeeM]

What does caffeine do? Lots of times it will calm down kids with ADHD. Not something to try at bedtime though :)

Actually, I have tried it... because it does work in large doses with my ADD eldest kiddo (but she's old enough to drink a coffee). A bit of soda here and there DOES seem to help during the day, but I hesitate to try it at night (more because of the sugar content than anything). I can't tell, though, if it helps, or simply doesn't hurt when he has a bit of soda or a piece of chocolate - it certainly doesn't make him MORE hyper, but I'm afraid to try it at night, lol. 

[maize]

My kids won't take iron drops (they really are awful!) but when I've had a little one with low iron levels adding more ground beef to their diet helps.

[AimeeM]

I think anemia can cause insomnia...I seem to remember that from being pregnant. 

 

Also, could some of those awakenings, where he is violent/destructive, be confusional arousals? (google). I's sort of like sleep walking, but not. 

It doesn't sound at all like Marco (who appears to wake fully, completely, and with full awareness)... but I'll tell you that it sounds an awful lot like DS5, who semi-wakes, asking for a drink at times, or to be held, but often to talk about random things (eyes open, but not really "there").

[Pegs]

I have an insomniac who talked late also. Our kids sound VERY similar. I have no answers for you, sorry. Mine is now 5. Very bright, very verbal, and presenting more and more ASDesque every day.

 

DS' late expressive language was a bit mysterious to me, as his receptive language was so obviously fine. From when he could crawl (about 5-6 months), I could ask him to retrieve particular objects from another room, out of sight, and he would do so. So, I guess that made me a little blasé about the speech. It all came together for him after his 3rd birthday. I thought language would make him much easier to parent, but it didn't increase his appetite or help him sleep!

 

The only little life-hack I can offer you, is that I've been able to discourage DS from jumping on furniture by consistently redirecting him to a mini-tramp. Oh, and I've put rope ladders and a trapeze and such up in some trees for him.

 

All this to say, FOLLOWING!!!

[bettyandbob]

I haven't read the responses.

 

My response is a reflection of "if I knew then, what I know now."

 

My oldest is 20. He was tested as having a very high IQ. Way back when he was a very little guy, he never napped. It was awful. Never napped. He also did not really sleep. He has attention problems, anxiety, sensory issues, multiple allergies, and other things.

 

We did follow all the protocols for good sleep hygiene. We had routines before bed. We read nightly and had calming activities before bed. We made sure ds had regular exercise. If we had not been so structured in our routines I think life in our house would have been more difficult. But he still did not sleep.

 

Many, many people told me if he didn't sleep he probably did not need it. I am certain today he has a sleeping disorder. I wish I had worked on having it diagnosed way back. By the time I realized sleep was a major problem we were working in do many other major problems and having so many issues functioning together that I couldn't add in "going to doctor for sleep" on the list. But I do think if I had and we had been able to get proper sleep studies some things would be better today.

 

Sleep remains a huge difficult issue in our house. So, I would think about trying to get a sleep study before too long.

[NorthwestMom]

 I know 2 unrelated little boys who are both highly gifted, ADHD, and both require medication or they do not sleep. For days.   :scared:

 

I see you have had speech and OT evaluations - I would want a full evaluation to get a complete picture of what is going on neurologically. Then you can look at the matter of sleep.

 

My heart goes out to you as a mom - I DO NOT DO WELL without sleep, you've already fought the good fight for years. I can't imagine how tired you must be!   :grouphug:  :grouphug:  :grouphug:  to you, Aimee!

[JFSinIL]

Could he have a 24-hour EEG to see if there is any abnormal activity cropping up to disrupt his sleep?  My kids had them starting at that age, they wore fanny packs that the EEG wires went into, so they were not tethered to a bed all the time (when they did sleep I plugged them into a larger unit. Yes, we did these at home after the first ones in a hospital.) 

[Little Nyssa]

This might be a really simple question, but how does he sleep if bedtime is much earlier? I noted that you said that occasionally he sleeps 12 hrs, from 7p to 7a. What makes the difference on those nights?

[T'smom]

Have you considered getting a sitter for overnight? It's not going to help him sleep, but it would help you get some sleep knowing that he was safe. Even if it was only a couple nights a week, I bet you would feel like a new woman! I can't imagine getting that little sleep.

 

Can you make his room completely baby proof and then just sleep on the floor and let him do whatever while you just lay there?

 

Hope you find some answers.

[PrincessMommy]

Do the sleep study.  I have a friend who has had sleep issues since babyhood.  She finally (at almost 40) had a sleep study.  She said she assumed they got nothing because she didn't sleep all night, but apparently they got a lot of information.  She has a condition that is not unlike Restless Leg Syndrome but all.the.time.  I can't remember what it's called (sorry)... but apparently there's been a lot of new research in this field and RLS is now considered spectrum condition, of which my friends condition is at one end.  I'm sorry, I really need to pick her brain about it, because I have RLS and should know more.

 

Anyway, she tried everything,  melatonin, magnesium, white noise, benadryl, herbal teas, thyroid issues, etc. etc. 

[MomatHWTK]

My ADHD/Aspie didn't sleep. But he had food allergies causing problems as well. 

[AimeeM]

My kids won't take iron drops (they really are awful!) but when I've had a little one with low iron levels adding more ground beef to their diet helps.

We love red meat! Lol.

Marco has a hard time chewing whole pieces of beef (like cut up steak), but if I can put it on pasta (like ground beef), he'll eat it :D He will eat anything on pasta.

[AimeeM]

 I know 2 unrelated little boys who are both highly gifted, ADHD, and both require medication or they do not sleep. For days.   :scared:

 

I see you have had speech and OT evaluations - I would want a full evaluation to get a complete picture of what is going on neurologically. Then you can look at the matter of sleep.

 

My heart goes out to you as a mom - I DO NOT DO WELL without sleep, you've already fought the good fight for years. I can't imagine how tired you must be!   :grouphug:  :grouphug:  :grouphug:  to you, Aimee!

According to the Interventionist, he's had a full eval. I'm not sure of that, though, to be honest. The eval results were so odd.

 

Completely off topic for a minute...

 

The initial eval stated that he was severely speech delayed (as of a few months ago, he only had about a dozen mono-syllable sounds, no real full words), and cognitively delayed a bit. <----- that second part shocked me, and his actual interventionist, and his speech therapist, AND his pediatrician. He has known his letters, letter sounds, numbers (counting by 1's, 10's, 2's; can easily show that he understands one-on-one correspondence, etc), colors, shapes, and has excellent problem solving skills - as noted by all of the aforementioned "team" members. In fact, he would ONLY say his letters, sounds, and count random things (every thing) for a while, and that was literally his ONLY real speech outside of "ma" and "da". Apparently, when I later asked, the evaluator wasn't allowed to note things as "successfully accomplished" unless they were accomplished by him in a SPECIFIC way. So, for example, when she laid down a line of tape on the floor and asked him to walk forward, towards her, and he instead smiled, shook his head, and walked backwards, she had to note that he "could not" (was unable to) follow the directions - even though she verbally expressed to his EI that she could tell he CHOSE to do the opposite of what was asked.... and when she would ask him to do things, or get things, and he shook his head, refusing, but when I would (in front of her) ask him to do the same, and he would, she wasn't able to mark it as accomplished because "he has to do them for me" ("me" as in the evaluator).

[AimeeM]

I haven't read the responses.

 

My response is a reflection of "if I knew then, what I know now."

 

My oldest is 20. He was tested as having a very high IQ. Way back when he was a very little guy, he never napped. It was awful. Never napped. He also did not really sleep. He has attention problems, anxiety, sensory issues, multiple allergies, and other things.

 

We did follow all the protocols for good sleep hygiene. We had routines before bed. We read nightly and had calming activities before bed. We made sure ds had regular exercise. If we had not been so structured in our routines I think life in our house would have been more difficult. But he still did not sleep.

 

Many, many people told me if he didn't sleep he probably did not need it. I am certain today he has a sleeping disorder. I wish I had worked on having it diagnosed way back. By the time I realized sleep was a major problem we were working in do many other major problems and having so many issues functioning together that I couldn't add in "going to doctor for sleep" on the list. But I do think if I had and we had been able to get proper sleep studies some things would be better today.

 

Sleep remains a huge difficult issue in our house. So, I would think about trying to get a sleep study before too long.

(highlighted) And that may be my problem. Some days I just don't think I *can* fit in ONE MORE DOCTOR. Marco has his in home therapies every week (going on three weekly, once we have OT come; sometimes more often because one of the therapists was out sick, or their kids were sick, so they have to make up time, etc)... and DS5's major medical... the cardiologist, the endocrinologist, the pulmonary specialist, the geneticist, the children's outpatient hospital that we're all too familiar with....

One more doctor. Just one more... but it seems like SO MUCH... especially when (and God, I hope this doesn't sound awful of me) this is my "healthy" kid. Marco is full of life, full of energy, and I really, really, really, really do not want to think that there is anything "wrong" with him. 

I'm tired.

[AimeeM]

This might be a really simple question, but how does he sleep if bedtime is much earlier? I noted that you said that occasionally he sleeps 12 hrs, from 7p to 7a. What makes the difference on those nights?

There is no difference. I've tried seeing if it's his dinner those nights, nap time those days... or what - but there's really nothing different. We lead a pretty nice routine most evenings. 

He typically goes to bed between 7 and 8. Sometimes even at 6:30. I've tried keeping him up a bit later. I've tried not letting him nap. I've tried ensuring that he naps (lest he get "overtired" and not sleep). I can't find a single link to the nights he does sleep well -vs- the nights he doesn't. 

Last night my husband was blessedly more aware than I was (he was having a hard time sleeping as well) and he took Marco at about 2 am and rocked him back to sleep in the living room for me.

[AimeeM]

Have you considered getting a sitter for overnight? It's not going to help him sleep, but it would help you get some sleep knowing that he was safe. Even if it was only a couple nights a week, I bet you would feel like a new woman! I can't imagine getting that little sleep.

 

Can you make his room completely baby proof and then just sleep on the floor and let him do whatever while you just lay there?

 

Hope you find some answers.

I've considered it, but right now the house is about to be in shambles as we are listing in a couple weeks.

 

His room is pretty Marco-proof... barring actually removing everything and padding the room, lol. He shares the room with DS5 (although DS5 can't sleep in there). Part of the reason why we're getting a larger house is because it would be easier to make "marco-safe spaces". Right now we have literally NO room to move out the "stuff" that is currently in the bedroom. However, when I'm sleeping on the floor in there, he doesn't really try anything risky - that I'm there seems to deter him. I *have* done as you said - I did it last night, actually, lol; I gave him a snack, a drink, and a tablet and I went back to sleep (in his room, with him). It works to a point... but inevitably he wants company (awake company) :P

[Farrar]

It sounds like he outsmarted the eval. Oh my.

 

Aimee, I think he may just need a padded locked room with a few non-destructive amusements to keep him going. Is that horrible to say? Probably. Gosh. But that's really what I think some kids need.

 

I did lock my kids in their rooms starting around that age for "quiet time." There were latches I put on the outside of the doors so they couldn't get out. I had to kid proof them pretty well. I had to leave a clock in there - for us, I replaced the numbers with pictures and took off the hour hand so that I could say, okay, your quiet hour is starting now when the arrow is pointing at the bird. It will be over when it goes all the way around and is pointing at the bird again. You can nap or not (they maybe did once ever), but you have to do quiet things and play alone if you don't nap. Forget the bedtime routine, if there was a routine that helped my kids get calm and positively recharged in the afternoon, that was it.

[Artichoke]

My ADHD/Aspie didn't sleep. But he had food allergies causing problems as well. 

 

 

Food dyes can also be a culprit in excessive energy and not sleeping, as well.   One of my dc has issues with yellow and blue dyes. 

 

From a practical point of view -- How do you feel about completely babyproofing Marco's bedroom?  in his sweet, adventurous case you probably need to empty it of most items and place the mattress on the floor.  This might let you get some more sleep.  Could you place an area rug on the floor to help with him throwing himself on the hardwood floor?  Could you only allow him a few soft toys and books for nighttime play for when he wakes up. 

 

You have my sympathies.  We had a climber that necessitated everything being bolted to the wall and no furniture in his bedroom. 

 

eta:  I see you answered this upthread while I was typing :-)

[Btervet]

He sounds a lot like my oldest. His sleep was all over the place until he was 3. He'd sleep in 2-3 hour increments, then be up for hours. He'd occasionally sleep for 12-15 hours straight. Naps happened sometimes, but rarely, until he was 3. His speech was delayed, no words at all until 2, no sentences until almost 2.5. He was very violent with himself if left alone in his room, he would jump off the bed, or bang his head into the wall repeatedly. I couldn't leave him alone for long because of this. I tried *everything* and nothing helped but time. I wish I had better advice to give, but I have no clue what made the difference with him. It got better for me when he took an interest in books. I could get him to stay in his room alone by letting him have the light on a "read" books starting around 2.5. He would spend hours looking at the pictures, so he wasn't sleeping better, but at least I was.

 

At 3, he could speak clearly. He started taking 2 hours naps. He started sleeping 10 hours straight at night. It was like a switch flipped and it got better. I hope time works for your little guy.

[Pronghorn]

My child had chronic insomnia for years, partly due to pre-adoption trauma, I believe. Sensory issues may have also come into play. Specific types of sensory stimulation might help Marco, along with possibly a weighted blanket.

 

Is Marco's room dark? The blue component of white light suppresses melatonin production. You can get a special night light at lowbluelights.com that may help. My daughter and I both use these.

 

Is Marco keeping himself awake using movement? My daughter used to do that, flinging herself frantically around if I tried to stop her. I found the only way to get her asleep was to hold her forcibly still for forty-five minutes to an hour. This may have helped with sensory issues too by providing deep pressure. Listening on a monitor and rushing in to soothe the child before he wakes can help break the waking habit.

[Ausmumof3]

I don't have much to add except with my toddlers if they had a two hour nap in the day I would be looking at a midnight bedtime. Could you try quiet story or cuddle time instead? Honestly though I think with that tiny amount of sleep you are looking at a medical issue and a sleep study would be best for answers even if you don't follow the recommendations exactly.

 

Also don't feel bad about the iPad. I have fallen asleep in my toddlers bed while he played iPad before. It's not the end of the world...

[countrygal]

(I didn't read all the responses, sorry.)

 

I just thought I would suggest turning of wireless routers (or just get plugged in ones) when not in use. Make sure his bed isn't near a wall with a large amount of electrical wires (like a panel box in the basement or on the outside wall.) Some people are just over sensitive to electrical magnetic fields and it is stimulating. This also applies if you live near a large power line or tower, but you have to move then and that's no small ordeal to see if it 'might' be a problem! Sounds wacky, I know, but I'm sensitive.

[Jackie]

You have my sympathies.

 

I'm not sure DD4 has ever truly "slept through the night". Falling asleep used to be a huge challenge. But she wasn't as constantly busy, nor was she destructive or dangerous. As she has gotten older, we have been able to give her options for what to do when she can't sleep and she has been able to do them. But even the maturity difference between when she was barely 4yo and now at 4y8m has drastically increased her ability to handle her own wakefulness.

[Liz CA]

What a horrific, exhausting experience for you and your dh. I am not sure how you can see straight with that little sleep. I would try to eliminate what I can from a diet standpoint, no food dyes, no sodas, low sugar, overall better quality food unless you are already doing everything organic, possibly gluten free (worth a try maybe). This could reveal or rule out food allergies. The ADHD symptoms can still be addressed separately but if there could be a chance to improve him with a change of diet, I would want to try. It may not be enough given the symptoms but it could be a beginning.

[MrsBasil]

My daughter didn't sleep for more than 5 hours a night(if I was lucky she would sleep for 5 straight, but I was rarely lucky) until a month before her 3rd birthday. I just survived on 2-3 hours a night for years. I couldn't really leave her alone in any room for to long. I tried once and she tried to climb OUT her window...on the second floor. I became good at catching cat naps, extreme child proofing, and taught my son how to operate Netflix so I could lay on the couch.

 

She was also a late talker, but she really bloomed and now speaks very well and all the time. She is busy.

 

YMMV, but there are two things that did seem to help. One was concentrated, forced outdoor time. Long hikes, walks, and visits to the park every day for hours made a huge, huge difference after a few weeks. We were all outside a lot.

 

And bedtime routines make things worse for dd, we pretty much go, go, go until bed and then it's jammies, up to bed, one song, lights out, and I am out of the room. The long routine to bed seemed to get her going rather than calm her down.

 

Those two things got her on a good sleep schedule and it has continued to work for 5.5 months.

[Jennifer132]

I would look into Diane Craft's Biology of Behavior. It's a supplementation program. I really think it could help your ds.

[Lang Syne Boardie]

I had one of these boys, too. Don't take this as judgment, it's totally not, but the only thing I'd suggest that nobody's mentioned yet is that you might want to make the home screen free. No more tv where Marco can see, hear, or be near.

 

Tv-free didn't solve my boy's issue - ADHD diagnosis, celiac disease diagnosis, and growing out of it solved it - but it did gain us an hour or two more of calm if not a bit more sleep every 24 hours. It's worth a try.

[Joanne]

Food allergy, particularly dairy.